Life: A Chronic Pain In The Neck…

Posted on September 14, 2012

It’s been a month or so since I wrote about my illness. I’m not having such a great day today, and for some reason, I feel like I need to get it out. So…if you came here looking for some light-hearted banter? I’d probably look away now. This isn’t pretty. Move on to the next post. That will be light and fluffy, I swear…

I don’t have much actual “news” to share, as such. Medically, not a lot has changed. I’m still waiting to see the Rheumatologist – my appointment’s been confirmed for October. I’m still on maximum doses of Tramadol, double dose Ibuprofen and Amytryptaline to sleep.

Lifewise? Things have been going well. My new business is coming together. I have lots of events planned. I’m doing my best to be everything I can be.

Physically? Things have changed quite a lot. And unfortunately, not for the better. I don’t even know where to start anymore, so I guess I’ll go back to the beginning and explain everything. I don’t know if it will make sense. It doesn’t to me. But maybe…somehow…writing it down will help me come to terms with it all a little more.

In January 2004, I was involved in a car accident. Someone stole a car, drove full speed out of a “no exit” road, smashed through my car, tore me to pieces and then ran away. As far as I know, he was never caught.

The years that followed were horrendous. I battled my way through the NHS for around six years – coming up against just about every problem it was possible to encounter. I was put on waiting lists and then taken off by clinical error, only to be placed at the end of the queue again. I was seen by the wrong people. I was passed from pillar to post. I had operations that worked, and operations that didn’t. I took literally thousands of painkillers (at one point, well over 20 tablets per day). I underwent residential rehab programmes to help me manage my pain. I spent months unable to get myself out of bed, or into the bath without help. I had trial procedures, shockwave treatments, injections into my back and under my kneecap, went through years of painful physio, tried every holistic option I could find, visited every therapist and Psychologist I could afford and at the end? Came out pretty much the same as I went in.

Nobody, no matter what they attempted, could find out what was wrong with me. I was told to learn to live with “it”. So, I learnt to cope with the things they couldn’t treat. I weaned myself off large amounts of medication. Like so many people around the world, I learnt to live with, and manage, chronic pain. Eventually, with some help, I went back to work and put my life back together. If I could have stayed at that level…all would have been well.

But no. At the end of 2011, I started to get more tired again. The pains started to return in my back, neck, knees and hips – but this time, there were new pains too. My chest hurt. There was a burning sensation around my breasts. I had huge lumps that were incredibly painful underneath my arms. I put it all down to chronic pain to start with, and just hoped that with the right management, it would calm down. And then the PIP scandal broke, and I realised that this wasn’t as it had first appeared. Along with thousands of other women, I had PIP implants, they had ruptured (severely) and I needed an operation, urgently. But once that was done? I should feel better. Marvellous. Light at the end of a very dark tunnel.

The surgery came and went in May. The pain stayed. Worsened. I was diagnosed with Lymphangitis, then undiagnosed, shortly afterwards.

I started to get more and more exhausted – to a point where some days I can’t stand. The pain increased in some places, and moved from others. Suddenly, I’m faced with all the original pains, at varying levels, plus new, soul-destroying symptoms. I have almost permanent pins and needles in my arms and occasionally in my legs too. You can cope with pins and needles though, right?

Sure. On their own. But along with it comes the inability to move my hands, elbows, knees and this last week? Toes. I can no longer straighten my fingers at all – and when I wake in the morning or after long periods of inactivity, I can’t bend them either. My elbows lock in place and it is agonising to try to regain movement. I get such intense cramp in my toes I can’t walk. Oh, and my knees give way if I try to stand.

And then there’s the sleep. It just won’t come. It doesn’t matter how tired I am – at least 3 nights a week I don’t even get one minutes rest. On nights I do, even with the help of sleeping tablets, it will be 2 hours at a time at the most. It’s as if something in my body screams at me to wake up and move – as if maybe, if I didn’t, I may never be able to again. I’m so tired. So horribly, heart-breakingly tired.

However – I’m lucky at the moment, as each symptom comes and goes. There’s always something happening, but there are times you wouldn’t notice my hands, and sometimes I can walk just fine. Most days, I look OK. Almost healthy. Unless you stare at my hands, you would never guess I was ill. There are no obvious external signs.

But internally? I’m terrified. I’m scared because it’s becoming more and more regular. The exhaustion is so severe when it hits that I can’t even get up to get my medication. I get excited when I have a couple of “good” days, when I’m almost normal – but they never last, and I am devastated when it all comes crashing down around me again. Each time, I have a mini-breakdown – a day packed with anxiety, depression, fear, tears. I’m trapped here, silently screaming in this body I hate, unable to escape even for a moment. Some days I want to scratch at my skin, cut myself open to let the real me out again. I think if I bleed, maybe some of this evil that lives in me will escape.

But I don’t. I stay quiet. I carry on. I throw myself into work. I smile. I put one foot in front of the other. I remember to breathe.

The Doctors say it’s a Connective Tissue Disease, but there are over 200 of those so as yet, I have no exact diagnosis. Many CTD’s are incurable and degenerative, and the thought of living like this forever or it gradually getting worse just doesn’t appeal, somehow.

Apparently, a high proportion of Connective Tissue Disorders are also triggered by trauma. I don’t know all the facts, but this shockingly could mean that whilst the PIP issue caused a lot of pain and devastation, the ultimate cause of this current state could still be that hit and run. And no-one, for over 8 years, thought to look into this. With all the Dr’s I’ve seen; all the hours in hospital, no one considered that it could be this.

Which is so incredibly unfair.

I’m sitting here right now with tears in my eyes, staring at my computer with very little left to say. I don’t know how to make myself better. I don’t know why this happened to me. I don’t know where to find the strength to fight through this right now.

But I will. I have got through bad times before and will again. I’m just having a bad day…and I know good ones will follow.

It’s just…so very lonely. When you’re ill for a long time, it’s not just hard on you. It’s hard on everyone that surrounds you. So I put a “face” on. I act tough. I try not to tell anyone how bad things are. I have the most amazing boyfriend in the world, but it’s unfair to talk about pain all the time. So I don’t. I internalise and just try to get through the day.

Friends still ask me to go clubbing all night. Colleagues get annoyed when I have to cancel meetings at the last minute. People don’t understand when I say I’m too tired to meet for coffee. I promise – I would do it all if I could. I want to live life again…so very badly. I don’t like saying I can’t…but truly, for now, I need to put myself first, however boring that may be.

So, I’m truly sorry for moaning. I hate doing it. It’s just cleansing for me, I guess, to get it all out on paper, where people can turn away if they choose. I don’t want to bring anyone down. I don’t expect anyone to feel sorry for me. That’s not why I write. I just want people to sometimes look beyond the obvious, and be aware.

Tomorrow, I’m sure I’ll dust myself off and get back to planning world domination, or something similar. But for now? I’m going to have a little cry, pop a couple of pills, and dream of how different life could have been, if I’d just not been in that place, in front of that driver, on that day.

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JJ is the Founder, Designer and Editor of Love London. She's insanely curious, intensely passionate about people and things she loves and likes nothing more than a good cheeseburger. She's also our Chief Sicknote - as she lives with CFS and Fibromyalgia. JJ recently made the move to the border of London and Hertfordshire, but will always be a Londoner at heart. is She has spent years finding out the best bits about this city, and now, she's happy to share them all with you. Talk to her about new restaurants, fashion, changing hairstyles and Pandas. Lots of Pandas. She loves Pandas.

No Comments

I’ve never met you, I have heard a lot through mutual friends, but you are clearly a fighter. Your courage shines through and transparency to post such open thoughts is inspiring. I’m not religious but believe that seeing as you’ve come this far and are still pushing on, the universe and the fluffy white beard in the sky must have big plans for you. Life is a book of challenges. I hope you continue to find the strength to overcome them. All the best and do hope James is reading you Batman comic books while you’re in bed. x

noelleraffy

September 14, 2012 at 4:13 pm

JJ,
We met a few years ago at at Tweetup that you put together in the City. I was new to London and trying to get out and meet new people. You were so outgoing and gracious, even preparing little goodie bags for each attendee. No one would ever know that behind your big smile and sparkling eyes what you are going through. I just wanted to say, I am sorry for all your pain. Thank you for sharing. My thoughts and prayers are with you. Hang in there! xx

Oh. My. Gosh! I cannot even imagine what your are going through. I was bed ridden for 36 hours earlier this week with a gastric bug and that was bad enough, but I had the comfort of knowing it would only be short lived and I would return to my normal self in a day or two. But if someone told me I would be trapped there for years on end I would be devastated. Your zest for life on the sprinkling of days that you feel good is amazing and admirable. A friend of mine suffers badly with Fibromyalgia another chronic pain illness in someone who looks every bit of a healthy person on the outside. She too internalises everything. :o( There are plenty of people in the world who are lucky enough to live a relatively pain free life who haven’t achieved half as much as you. They see minor faults as obstacles and stop in their tracks, you step over them. You really are quite an inspirational Little Lady!